When Carolyn Thalman Laraway and Beth Stillitano met in summer 2013, they immediately felt like old friends.
They bonded easily over a shared diagnosis and a strong purpose.
Dilworth resident Laraway, 59, and Elizabeth Place resident Stillitano, 43, both suffer from Reflex Sympathetic Dystrophy, also known as Complex Regional Pain syndrome.
The two are the coordinators for the second Fight the Flame 5K race at 8 a.m. Nov. 2 at McAlpine Creek Park. Proceeds will benefit the Reflex Sympathetic Dystrophy Syndrome Association.
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According to RSDSA website www.rsds.org, “Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.”
Stillitano said the clinical McGill Pain Index rates RSD pain the highest form of pain known, ranking higher than amputation and chronic back pain.
Stillitano has been living with RSD for 18 years. Doctors diagnosed her in the late ’90s, when her symptoms were inconsistent with a work-related knee injury.
Since moving to Charlotte in 2005 from Long Island, N.Y., Stillitano’s RSD has spread to her right foot, the right side of her neck, face, right shoulder, right arm, her jaw and her right eye, which is causing vision problems.
Laraway’s RSD started 11 years ago, she said, after breaking a bone in her left foot when she fell off a curb. Her symptoms have spread to her right foot and to her left hand after she accidentally cut it with a knife two years ago. She said her pain is mainly burning, very sharp stabbing and throbbing, and it intensifies with some weather conditions.
Stillitano said she puts her best face forward no matter how much pain she is experiencing, “so people assume I am perfectly fine and say I must not be sick,” she said.
“If I was to look and act how I felt, I would never get out of bed.
“RSD/CRPS is called the ‘suicide disease.’ I will not be part of that statistic.”
“We have to put a huge amount of energy into just getting through a day and hiding how we really feel,” Laraway said, “but I do choose to live.”
Both women say they are excited about the support for and awareness of RSD/CRPS that the Fight the Flame 5K is bringing to Charlotte.
“The mayor has declared Nov. 2 to be RSD/CRPS Awareness Day,” said Stillitano. “The Duke Power Building was lit orange on Oct. 21 in support of Fight the Flame 5K, and Governor (Pat) McCrory just gave us a proclamation for Nov. 2 as well.”
The inaugural Fight the Flame 5K in 2013 was the brainchild of Stillitano’s 13-year-old son, Landon, and his friend Gabriel Novack, 14, who wanted to do something to support Stillitano’s battle.
That first run had 200 participants and raised nearly $18,000. The second Fight the Flame 5K already has 20 sponsors and 11 teams and has raised $12,000. People from 12 states are participating.
“In addition, a satellite Fight the Flame 5K walk will be occurring again for the second year in a row in Ohio,” Stillitano said.
The Fight the Flame 5K is an official time-chipped race with prizes awarded to top runners in all age categories, Stillitano said.
“Working with Beth on this race helps us both feel like we are getting the awareness out to the public, and hopefully the funds will aid in finding a cure,” Laraway said.